I just got back from a week-long vacation at the beach with family and friends. Some of them know about my history of TBIs, while others of them don’t. It was an interesting time — it was good to spend the days with people I love and care about (and vice versa). And I did really well, overall. I only came close to melting down once, and then I was able to pull myself out of the tailspin before things got too out of control. My partner complemented me on how “well” I did — clearly, they were not aware of the turmoil I was in, much of the time.
Overall, it’s true — I did do “well”. But it was also a little dicey at times. Like when I kept slamming into things and injuring myself — scraping the skin off my left forearm on the sharp edge of the screen door latch… getting several bruises from furniture that protruded out into my wobbly path… and various nicks and cuts I don’t remember getting, but discovered later when they started to sting under hot running water.
It was a pretty physically rigorous time for me. I had been lugging all the bags of foodstuffs and various creature comforts my spouse likes to take with us, when we go. Things like the specific foods we eat, the different changes of clothing, the binoculars and bird book, the hats and boots and coats, the books and CDs and various electronic gadgets we can’t seem to do without, not to mention the laptop(s) — one for my personal use, one for work — and the associated work that I brought along with me to look at, at my leisure. All in all, I hauled a whole lot of stuff — in a lot of small bags — into the 3-story condo we rented, a short walk from the beach.
I know I pushed myself too hard, but I wanted to. I was so sick and tired of taking it easy and backing off on my activity, just to pace myself. I was sick and tired of stopping to rest and monitoring my energy level and the food I was eating and the ebb and flow of my emotional self. I was so sick and tired of limiting myself and being sensible about everything. I was sick and tired of being mindful of my mind, of accommodating my broken brain. I just didn’t want to be less-than-functional (by choice) while I was on vacation. I wanted to be free, goddamn it. Free.
But there was a price for all that freedom. No matter how I tried, I kept running into things. I was off balance, and my sense of where my body was in relation to the world around me, was not good. I had a hell of a time judging where to put my feet, how fast to move, and how much distance to put between myself and objects I was passing. What’s more, I tended to injure myself when I was deliberately trying to avoid another hazard — stepping around a small fan my partner put on the floor near the bed, I slammed into the sharp corner of the bed frame and got myself a half-dollar-sized contusion that swelled up and turned a nasty shade of purplish-yellowish-green. I still have it, a week later, and the purple border around it is spreading wider like a ghoulishly blooming flower. It was bad enough, when I hit it the first time, but I couldn’t seem to navigate the space between the bed and the fan and the wall, so I hit the corner a couple more times. Dang! I hate when that happens!
Anyway, pretty much the whole time, I was really off balance and had a hard time coordinating. I had to move pretty slowly at times, and I felt dense and thick and foggy a lot of the time. Nobody seemed to notice — I was my usual self, as far as they were concerned. They’ve always known me as this quiet, “introspective” person… a person who would rather say nothing than open their mouth and have everyone realize that they don’t have a clue what the hell is going on. I’ve always erred on the side of caution, when it comes to social interaction, and it’s helped me “pass” as neurotypical throughout most of my life.
I know it works, so I fell back on that behavior again. I was just so out of it and tired and turned around, I couldn’t even begin to navigate all those social waters with any level of personal authenticity. True to my past form, I spent an awful lot of time keeping quiet and keeping busy, covering up my difficulties and going along with what everyone else wanted to do, so I wouldn’t get in the way of everyone’s fun. Everyone was having such a good time — why spoil it with my slowness, my warnings, my whining?
Yes, everyone had a great time, including myself, for the most part. But I spent a lot of time feeling out-of-it and numb. Like I was swimming underwater. Like I used to feel all the time, before I got in touch with my TBI issues, and was still constantly scrambling, trying to stay on top of what was going on around me, without paying any attention at all to myself. I just wanted to relax, not “ride herd” on my issues. So, I spent a lot of time pretending they didn’t exist — to others, and to myself.
I really wish I could have been more present for the vacation. I’m still pretty numb and out of it, in fact. It’s going to take me a while to get back to where I was — not quite as off balance, and a lot more clear and present. I’m going to have to take things pretty slowly, I think, if I’m going to regain my footing. But everything is going 100 miles a minute around me, these days, so I have to keep up… I still have to keep up. And learn what I can, as I go.
Here’s what (I think) I learned from this vacation:
I think the first thing that got me in trouble was, I had been going 200 mph for a number of days before the trip, trying to get ready to go away, tying up loose ends at work and packing my bags, getting scheduled tasks taken care of ahead of time, and doing all those things that needed to be done in preparation for the trip. My spouse did most of the nitty-gritty preparations, bless ’em, but it’s so hard for me to go away and take a break from my standard routine, that it was a pretty stressful time, leading up to this “vacation”.
In addition to going 200 mph for about a week prior to the vacation, I got behind on my sleep and my work. I hadn’t been sleeping well, for a couple of weeks prior to the trip. I am concerned about my job (who isn’t?) and I am concerned about not having a decent financial safety net in place. My cost of living is going to jump in 2010, and I need to figure out what steps to take to safeguard my family’s health and welfare. There is really no one else who can help me — my extended family are all as tapped as I am — nobody has money, and nobody understands the kind of work I do. I’m on my own, and I haven’t been 100%, lately. I haven’t even been 70%… at a time, when I need to be at 99%. And it worries me.
Being worried has contributed to my sleep problems, which has also complicated my work situation. I find myself having a lot of trouble reading and understanding what I’m reading. It’s taking me literally months to “get” information that used to take me a few days (if that) to understand. This is maddening on so many levels — not only is the material I’m reading not that complicated (according to folks whose judgment I trust), but it’s also much more critical than other material I’ve read before. I’m working at a higher level — with higher-level requirements and bigger consequences, if I mess up. But my brain is not cooperating with wrapping itself around the material.
But despite my difficulties, I have a hell of a time being able to ask for help. Part of the problem is my pride — part of me is too vain to admit that I have trouble just reading a full paragraph. Part of the problem is not being able to understand the exact nature of my problems. And another issue is that the people I need to ask for help, don’t think I need it. I got several “lectures” over the course of the week from friends and family who know about the issues I’ve been following up on, but none of them really takes this seriously. They told me that I was just paying too close attention to myself, that everybody has these problems, and that I shouldn’t be so hard on myself. I should relax and just cut myself some slack. (Even my psychotherapist, who knows about my TBI history, has been urging me to not work so hard — just at the time when I have to work even harder.)
All my friends and family were giving me this “encouragement” through a dense fog that had settled over my head a week ago, last Friday… as I really struggled to follow what they were saying. I’m sitting there in the sitting room of the condo overlooking the beach, smarting from a number of minor injuries I’d sustained because I was so off-kilter and out of whack, only getting about half of what folks were saying to me, totally freaked out because I’d been trying to read, early that day, and I couldn’t get more than a page’s worth of material into my piecemeal brain, wondering how the hell I was going to complete this critical task at work that requires I learn material I can’t seem to get my head around… and they’re telling me, basically, it’s all in my head.
Well, yuh, it is all in my head. But not the way they think.
Lookit, I’m not a complainer, I’m not a whiner. I don’t like to draw any amount of attention to myself for any old reason. I detest being in the spotlight, and I would be quite content to live and work behind the scenes, all my born days, if I could make a handy living that way. I cannot abide being under scrutiny by others, and I hate paying any amount of attention to myself. But you know what? If I’ve got problems that are really, truly getting in my way, leading to injuries, making me physically ill, and possibly threatening my livelihood and my ability to provide for and protect my family, then it behooves me to make an effort to clear things up.
Contrary to what some people in my life have intimated, I’m not wedded to the idea of being disabled. I want anything but that. People have encouraged me to look into filing for disability, and I’ve flatly refused. No judgment on anyone else out there who requires and chooses that option, but I’m not going there. I’m like that knight in the Monty Python Holy Grail movie, where his opponent has chopped off his arms and legs, and he insists “It’s just a scratch!” That’s my style — not calling attention to every little ache and pain. And as a result, I have gotten myself into situations where I over-estimated my physical abilities and really fried my system. And then fell down the stairs. Or out of a tree. Or got into a car accident. I like to think I’ve learned my lessons from before, and by paying attention to my limits, I can better care for my limited ‘vehicle’. I’m just trying to find a balance. Find the truth. Figure things out. And keep safe, so I can live a long, fulfilling, productive, and happy life.
But when I make any attempt to discuss my situation with people close to me, they cannot handle it. Not my spouse, not my friends, not even my best friend, who has studied TBI and is getting a masters in special education. They all react with horror, shock, dismay, denial, when I tell them about what’s really going on with me. If anything, I tend to under-state my situation and I don’t tell them all the details, but even the “easy” stuff they have difficulty handling. I guess they love me so much, they are horrified at the thought that things are as challenging for me as they are. That’s nice, but it’s also a pain. People and their attachments to me are… a problem.
What makes things even more… interesting… is that I have a hell of a time explaining what’s going on with me. In this blog, I can write and be clear and edit myself, in the privacy of my own anonymity. When I’m in conversation with someone, I often don’t know how to articulate my thoughts in a way that makes sense to them. I either give them too much information, or not enough. I either understate my situation, or I overstate it. It’s all but impossible for me to accurately convey to someone — especially someone I love and care about — the true nature of my condition. They start firing questions at me, and I can’t keep up, so rather than answering them clearly and accurately and authentically, I just say the first thing that comes to mind, for the sake of moving the conversation along. It’s what I’ve always done, in the past, and they’re used to it. It’s pre-MTBI-awareness behavior that persists to this day, because I don’t want to slow down the flow of conversation, and I get very impatient with myself. So, I leave myself behind — and everyone has a grand time, including the part of myself that doesn’t want to deal with my cognitive-behavioral issues.
Anyway, what I learned from this (among other things) is that there’s not much point in discussing my situation with my spouse or my friends. They just aren’t equipped to deal with it, and they aren’t willing to learn more about it. They hear “brain injury” and they think the worst. Or they hear “head injury” and they look for certain stereotypical signs that I’m cognitively compromised. When they don’t see them, they think I’m either exaggerating or making a mountain out of a molehill. But when I do explain the seriousness of my situation to them, they get all alarmed and go into panic mode.
This is not helpful. For me, or for them.
I don’t need tears and fears. I need information, courage, knowledge, and confidence that no matter what comes, I’ll be able to find some way to meet the hurdles that rise in my path. I always have, and I always will. I don’t want my friends and family to cluck their tongues and say, “Poor dear…” That feels so patronizing and condescending to me. Pity stings me worse than outright cruelty. I want them to just sit and listen to what I have to say, acknowledge my situation for what it is, not deny it and tell me I’m making too much of this… or become shocked at the level of dysfunction that I’m steeped in, at times.
This twice-hidden disability business is a real bitch, sometimes — pardon my language. It not only keeps me from having an accurate perception of my own state of mind, but it also keeps me from being able to accurately describe it to others in a way that seems truthful and accurate to the ones I care most about. At best, it puzzles them. At worst, it makes me look like a liar. And the more I look like a liar to them, the less inclined I am to share what it is I am experiencing and need. The more inclined I am to just disappear into the woodwork, smile and nod and be obliging and compliant… and completely forget that I am in the room, too.
So, yeah, this past week, I took a break from my brain — or rather, the people closest to me did. My spouse got to run around with our friends and family, pretending all is well and I’m all fixed and what-not. My friends and family got to either pay no attention to my dulled, dense behavior, because that’s what they have come to expect from me, and as far as they’re concerned, that’s my “normal”… or they got to tell me that I’m just fine they way I am, and I shouldn’t be so “hard” on myself. My spouse got to shop and eat out and see the sights, without me pulling on them to slow down and not stay up so late, not spend so much money… and they got to tell me how “well” I was doing, as I was barely keeping up… or barely keeping my balance. Everybody got a vacation. They got a vacation from my TBI.
If only I could have taken a break, too…